About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Thursday, October 30, 2008

Hi Everyone! Happy Halloween! Be safe, whatever you decide to do tomorrow! A couple days ago I didn't think I would have anything to blog about, but of course now, I've got plenty! My Uncle Jesse is here, visiting from Oregon and my Uncle Luis and Aunt Betty are here visiting from Nebraska! Since my sister Celia and I lost our dad when we were very young, we always loved and respected our uncles so much! You know what makes me feel great? Both my uncles have taken the time to tell Mark how much they appreciate him taking such wonderful care of their niece! Here is a fun fact - Uncle Luis and Aunt Betty got married the same day/year that Mark was born! So, come December 31, Mark will turn 49 and they will have been married 49 years! We have laughed so much and had a great time visiting with everyone! (see photos!)

Went to Moms on Monday night because Vicente turned 77! Vicente is the best! He is so supportive of me and our entire family! He always welcomes us over and we always have so much fun! He makes sure to remind mom to call Cinderella (me)! We wish him many, many more birthdays!! Saba wore her "little black dress", and Mark made Vicente a delicious German chocolate cake! Mark included some Heath chips in there, along w/drizzling some chocolate and white chocolate over the top! We had picked up pizza @ Pizza State and the Fossums joined us as well! Minus Davis of course - boo hoo! Everyone loooved the cake - outstanding job Mark!

So Tuesday after work, I was sooo sleepy, I decided to take a nap! Mark woke me up later telling me dinner was ready (my friend Olgas favorite - Brauts w/Sauerkraut and German Potato Salad). He had just walked away when I sat up and felt that my neck was wet. You guessed it! Dang your good! A BLEED! What? I had been doing so well! I should have known it was coming - see photo of puffy eye! That's usually what that means - I get a puffy eye around the time I'm due to go back to Colorado, but this is early! After a few days of sporting the puffy eye, I could tell it wasn't going to get better, so I called Rhonda in Colorado. I described the eye and she felt some steroids were in order to get rid of that! Meanwhile, she also suggested I have a bone density test, as I've been on steroids periodically now for 4 years. Are we having fun yet? Yeah, poor Mark - I was just covered in blood, so Mark had to take the allergen cover off all my pillows (since I sleep almost sitting up) and my nightgown all had to be soaked and washed.

I'm having fun w/my little Saba! I take her everywhere, and the few times I don't, they ask for her! I took Rulon to work one day and Saba was missed - the clerks @ HEB ask for her too!

Wednesday, our dear friend Terry Schneider had a Mass for our intention, so we went to ST. Pauls that evening. Thank goodness Celia called Mark on his cellphone - we had both fallen asleep and ended up being late for Mass! I was happy that Celia made it out there too - Terry includes the Fossum family in the Mass intentions as well! Rev. James Stembler always has time to talk to us for a few minutes after the Mass and offers more blessings!

So, that has been our last week or so of adventures! As always, I couldn't get through w/out my darling husband Mark! He makes me so happy and takes such great care of me! If I'm not feeling my best, he picks up my slack around here, so not only does he make dinner, but sometimes cleans up afterwards too! Woke up from a nap today (the Neuontrin makes me ridiculously drowsy) and found Mark had gone to the store, picked up my prescription and made dinner!

I thank all of you for all your prayers and well wishes - I sure need them!! Thank you Terry Schneider for all the Masses you have for our healing intentions! This is a hard journey and sometimes I don't handle this well. Last week seems everyone I saw was staring @ me or asking what happened to my face! For some reason, EVERY time there is something on the Health channel w/someone w/a huge tumor or something on their face, people feel they must tell me about it! I really don't want to hear about it - I just want to forget about mine unless I'm in pain or bleeding! I thank all of you that treat me normally and so many of the people I work with are so nice and helpful! This means you ladies in the Tax Assessors Office, Martha Sanchez in Risk Management and Connie Morgan in IT! I've mentioned them before, but they are just the best! There is another lady in the Auditors office that us super sweet, her name is Ida and she always has a kind word for me and asks how I'm doing!If I could ask for a teeny favor of you - It would mean so much to me if you included my e-mail friend from Holland in your prayers! Marijn is going through so much - he just had his avm surgically removed and lost lots of blood! He is having embolizations now and also the hyperbaric oxygen treatment! Shalon had told me about the latter treatment and I had told Marijn. This has been very helpful to him, so thanks very much Shalon! Shalon just got back from her 9th procedure in Denver - please do keep up w/her blog and website! It's interesting how both she and I have avms on our face, yet there are different ways to medically treat us @ different stages of our avm! This past time, Shalon just got all coils (yikes!) and no alcohol! She has inspired me so much and helped me set up this blog so I can keep in touch w/all of you! Please pray for her as well - that all avm-ers will heal! Thank you for visiting with me and being part of my journey!

Wednesday, October 15, 2008

Hello to all who stop by for a visit! I really hope your world is going just the way you want it! Take time to appreciate and enjoy feeling well if you do feel good today! Don't take those days for granted! Ok! Here we go!

This morning, I am sore from that fall I took yesterday! Aches and pains I didn't count on having this morning! Let me also reach back to late last night when I was trying to fill my prescription for the oxychodone extended release for pain. Originally, that prescription was given to me in CO. Well, HEB here did not want to honor it, so I had dropped it off @ my primary care physician Tuesday so he could rewrite it for me! No problem there - Mark picked up the written prescription that afternoon. Well, by the time we took a nap, got dinner, etc. - we were heading to the 24 hour Walgreens near our home to get that filled about 9pm! I had taken my last oxychodone that evening too! Turns out, they don't have but a few pills, so we were sent across town to the other 24 hour Walgreens, and by now it's almost midnight! Once we get there - the pharmacist says, she can't fill it until they fax my primary care physician a form that he needs to sign. My insurance had approved Dr. Yakes giving me this medicine, but NOT my PCP! Great! I have NO PAIN MEDS! Ok - I thought I could get by with taking the Hydromorphone for breakthrough pain to get me through while I worked, until the pharmacy could get my doctors signature and approval. So ... I went to work, took my "weak pain meds" and proceeded with my day. Lets add the fact that it will rain all day today into the mix! If anyone knows what that means around here - let me spell it out for those of you who don't! H-U-M-I-D-I-T-Y!!!! So the morning is not so bad, my friend Diana had asked me to join her for lunch and Mark would be joining us as well! So, when it's time for us to leave - I knew it was raining and I grabbed my purse and umbrella - completely forgetting my wound care bag! Soon as we stepped out of the building, it felt like a sauna out! The heat and humidity was almost too much! We head to the restaurant, Mark is already there and we place our order. We hadn't been there 10 minutes, when Diana gets all excited and starts pointing to me - right away I suspect the worst! Of course! I'm bleeding! I grab a napkin and put it to my wound area and get Marks attention to help! Of course we know that I left my wound care bag under my desk @ the office! Let's also add that my left ear is hurting and the tube in there is clogged and all I can hear is the muffled sound of my pulse constantly. I know there are people with bigger problems - but this is just something I'm going through right now and I really have no right to complain - but I will anyway because this is my blog! Come on! I have to add some humor, ok?

So, luckily, this is not a major bleed. Diana gets up and finds us more napkins while I'm putting pressure on my face w/one hand and eating enchiladas with the other! Got the bleeding stopped soon enough - finished our lunch and we headed back to the office where Mark redressed the wound area! At this point I'm debating - should I go across town and try and get my pain meds that are finally approved and ready? Oh no - Cyndi thinks she is superwoman and can get by the next few hours just taking another dose of the hydromorphone because I don't want to have to ask my supervisor if I can leave! I don't want my employers to think I'm a hassle because of this avm! So I let another hour go by, and I've taken a Neuontrin thinking I'll be ok! Meanwhile, my hair is a big frizzy mess, so I'm feeling ugly! My co-workers can tell I'm irritable and ask me what is wrong. Bless them for even approaching me in the state I was in! Carlie and Roland laughed when I walked in their area and hissed and made a face over my pain. They are the best - they make me feel better and I appreciate their humor! I really, really, really want to try to hold out and be good and NOT disappoint my supervisor by asking to leave for the day - but I could NOT HOLD OUT ANY LONGER! There was just no way - so ... as soon as my co-worker returned from her lunch hour - I stepped into Mr. Rios office and explained my situation. He is extremely supportive and told me not to worry about what anyone else thinks, and realizes my situation and approved my leaving for the day! He added that after my fall and bleed yesterday, probably 95% of the people would have left if that had happened to them, but I stuck it out! I just wanted Mr. Rios to know that I really tried my best to make it through the day and send him a shout out for being so great about my having to leave! By the time I made it all the way across town to get my meds, I didn't get home until 3:30pm and couldn't take an oxychodone until 5pm! I took a nap when Mark got home and Mark made some wonderful comfort food for dinner! Fried chicken, mashed potatoes and gravy and brussles sprouts! Mark is the only thing that makes me feel good (ok, besides the oxy)! Mark also picks up the slack for me when I'm feeling rotten, like today! When I'm hurting, the last thing I feel like worrying about is cleaning the kitchen or doing anything I absolutely don't have to do! To boot, it's bosses day tomorrow and Mark is making cookies to take to the office! He made choc. chip, oatmeal and peanut butter cookies!

I can't say I'm pain free right now, but hopefully by tomorrow I'll be back on track! It's the worst thing letting my pain get out of control because I couldn't get my meds! The pharmacist said I could have the meds if I paid cash - $184.00! UGH! By the time we got home after trying to get my meds - we didn't get to bed until almost 2 a.m.!

I'm including a photo of my angel Mark that gets me through these rough times! This was taken @ the Mother Cabrini Shrine in Golden, CO! When I get discouraged, Marks got the encouraging words that keep me going! All of you help me get by with your prayers that give me strength and hope! We've come a long way together and have just a little longer to go! Please stay with me on this journey and let us see the end of it successfully together!

Love to all!

Cyndi

Tomorrow is my very last steroid after this procedure! Boo hoo!!! Oh! How could I forget to add this! I went downstairs to get the mail while I was @ work and saw my friend Felice's dad that works in Maintenance. He saw me and came over to ask how I was doing, because he heard about what happened yesterday! Yikes! What on earth is being said? I'm sure I freaked people out with the bloody mess I made after my fall - darn it all! Tomorrow has to be a better day!

Tuesday, October 14, 2008

Greetings to all this evening!

How is everyone? Well, I've had quite a day I thought I would share! I still can't believe what happened myself! So, it all started this morning right after I got to work! My co-worker Kathy had been out last week, just as I had, and wasn't in yet this morning - and our Supervisor Mr. Jay Rios was about to leave for a meeting @ the main office - so I needed to go down the hall and leave the phones @ my desk while I did what I needed to. I was rushing, so I could get back, when I tripped over my own shoes, just for being in a hurry! I fell forward and kept hoping I could catch myself before doing too much damage! No such luck! I'm guessing when I fell forward or from the stumble, my right big toe jammed to the end of my shoe and is now hurting! I ended up bumping into the wall, then falling backwards where I hit my knee and then landed on my behind and then on my back! Luckily, @ this time of the morning, many of my co-workers were going about their morning routines and saw what had happened to me! I know there was a man down the hall that asked if I was ok, and I remember saying, "I don't know"! and moaning in pain (and shock)! The next person I remember seeing was Connie Morgan from the IT department! I know she had a very concerned look on her face and ran to grab a handful of paper towels after telling me I was bleeding! I had a feeling that would be happening! From the impact of the fall, I started bleeding from the wound on my face. For those of you new to my blog - I have an AVM (arterial venous malformation)that I have to constantly be looking after! PLEASE VISIT MY FRIEND SHALON WHITGOBS WEB SITE FOR LOTS OF GREAT MEDICAL INFORMATION ON AVMS! YOU CAN GET TO HER SITE FROM MINE, OR GO TO: http://sites.google.com/site/shalonsavm/Home. I remember my co-worker Roland asking whether I needed help getting up off the floor. People were asking me what they could do to help - I said to no one in particular, that I needed my medical bag that was in my desk area. Immediately, my co-worker Gina McMillan ran to my desk and got my 2 totebags. I got up, took the totebags and told everyone I would be ok - I just needed to get the bleeding under control by putting pressure on the wound site. I met Martha Sanchez from Risk Management that is a sweetheart! She told me not to be concerned @ all about the bloody mess on the floor - she was calling housekeeping or someone to come clean up! I want to make sure you know that the bleeding came from the impact of my fall, but not because I actually hit the area of my face or anything. I knew when I hit the floor that hard, that I would probably have a bleed from the wound area.

My co-worker Ray Rodela was very concerned and kept asking what he could do to help. He's always told me if I ever need him to cover the phones while I need to go down the hall, he is more than willing to help! Another co-worker, Kim Escamilla came to the bathroom to check on me, and make sure I didn't need any help getting the bleeding stopped. Grace Garcia, my co-worker kept asking whether I was dizzy or needed to go home. Even the tall, young man that works down the hall came to the bathroom door to ask if I was ok! Gina took over answering the phones until I could get back to my desk, thanks so much! We have a great team of people @ Court Services Supervised by Mr. Jay Rios!

I just wanted to take this time to thank all of you for being so great in my time of need! I know now that I have nothing to worry about should this have been an actual emergency! I think it was Connie Morgan that asked if I needed her to call 911. She came in to my department later in the day to check on me. Martha Sanchez really made me feel better talking to me about some of the things going on in her life medical wise. Of course I filled out a workmans comp. form for my protection - but I think I'll be fine! Thank you so much everyone on the 3rd floor that came to my rescue - I am very impressed with how everyone came together to help!!! Normally when I have a "bleed" @ work, my friend and co-worker Diana Arredondo helps me redress the area, but she was @ the main office @ a meeting, so I was on my own this morning. I probably could have put something together from my wound care bag to cover the area, but I called my husband Mark to come help! After that darned fall, I really needed some TLC and the best one for that job is my amazing husband! He was over right away and got my wound area redressed! After a couple great hugs, I was good to go! I usually keep an extra t-shirt in the bag which I needed to change into after bleeding all over what I was wearing earlier!

A few years back I fell down @ work while I was working @ the main office, and I still have one of those walking casts (boots) - I'm wearing it now and think I'll wear it a while! At least it will slow me down some! Wish I had a photo to include of my co-workers, but I'll see what I can post for now! Thanks again everyone!

Oh! I happened to have taken Rulon w/me to work today, but already I'm being asked where Saba is! For those of you who don't know - Saba is my Therapy Build a Bear! She is named after one of the techs @ the Swedish Medical Center where I have my procedures for my avm! The real Saba is from Eastern Ethiopia and a doll!

Cyndi Schuman

P.S. The photo I've included, was taken outside the Whole Foods Mart in Englewood, CO! My sister Celia and I had gone for one of my treatments around this time last year and it was snowing!

Friday, October 10, 2008

Hi again Family and Friends!

Well, last night we were sleeping soundly - then about 2:30 am my moisture sensor alarm went off! I immediately sat up in bed and was touching my neck area to see if I was bleeding! It's like a firedrill when the alarm goes off! I immediately get out of bed and run to the kitchen sink, while Mark goes to get my wound care bag! Mark is the one that realized it was a FALSE ALARM! We thanked the Lord for that one! It's the heavy duty steroids I'm on right now for the swelling that causes me to sweat a bit! It just turned out that the neckline where the alarm is attached was damp from my sweat and set the alarm off! At least we know it's working, huh?

Here is another photo from our trip! This is nurse Amy and she was taking care of me in Post Op!

Just thought I'd let you know the little things that happen around here during the AVM world we live in right now! Mark went off to work this morning and is doing better w/that cold he had! My left eye is still swollen, but I can see w/it a bit! I'm sure by tomorrow it will look alot better - but see in the photo how my eye was already swelling and the left side of my top lip is swollen too!

Take Care everyone and as always, we'll keep you posted on our adventures! I plan on going to moms today to hang out and help her w/some computer stuff and she'll be happy to see Saba and Rulon!

Thursday, October 9, 2008

Hi Everyone!

Well, our adventure for our recent procedure started when we boarded the plane in Corpus Christi - before reaching our destination (Dallas) I had a bleed! Yikes! As always before one of these trips, we are going on 3 hours sleep, so I had just bumped the coffee on my tray and spilled it on us and right after that the bleed happened. Mark was able to get it all taken care of right where we sat - I told him to call the Stewardess to help! Once she saw what was happening, she took the coffee cup away from Mark and came back w/extra paper towels and wet naps!

We arrived in Denver mid-morning, picked up the car rental and headed to the hotel to change out of our clothing that had blood on it. We then took my two Build a Bears to one of their workshops for a tune-up! One of Sabas arms needed more stuffing in it, and we were changing the "recording" Celia had put in when she bought her bear originally. We decided he'll be a boy bear, but we haven't named him yet! Since he also got more stuffing (at my request), he's a big guy! So I thought of calling him Bruiser (sp?) or Rulon, after the US Wrestler that upset the Olympic Russian that had won three gold medals prior to this Olympics in Australia in 2000!(see photo of Saba and Rulon getting some stitches open to put more stuffing in)! They both looked so great and you can't tell that they were ever opened up! Of course this service is free!

After leaving Build a Bear, we headed to Dr. Reeds Office where he makes sure my air passages are clear for that breathing tube that I need to have during the embolization! Don't forget - be looking for Dr. Reed on HGTV starting Oct. 13th @ 9pm, as they renovate Dr. Reeds Denver cottage! Dr. Reed was pleased w/how the inside of my throat passages look - so no troubles there! See photo of Shannon doing the endoscopy. Mark took a photo of us on Dr. Reeds office balcony when we first arrived.!

We picked up something for dinner @ Whole Foods and then went back to the hotel to rest! We needed to be @ Swedish Medial Center by 8am where we eventually end up in Ambulatory care to start processing me before having the embolization! Here I am w/one of the nurses in Ambul. Care - Boston, a/k/a Mary! She is always in a good mood and is always eager to help! Sue is our absolute favorite - she is hilarious and in the photo her arms are a blur! I had to get a photo in of Rick - he is the BEST Recovery Room nurse in all my hospital years! Even this time when I was put in recovery, Rick wasn't in charge of taking care of me, but came over to say hello and made sure I didn't need anything - but I needed something for pain and he got on it immediately. He is so great @ what he does and is funny too! He started telling me something that Shalon told him she would be doing on the day of my embolization. They apparently communicate on Face Book (I don't know what that is), but I asked Rick what he was talking about. I had no idea what on earth his response would be, but he said, "Oh Shalon said she is drinking a Starbucks in your honor"! Cool! Mark always brings me a Starbucks White Choc. Mocha the morning after a procedure!

Oh, to boot - there was no room @ the Inn, so I was given a choice. I could go back to the hotel, or I could stay, but would have to spend the night in Ambulatory Care! There were some poor people stuck in ICU and had to sleep there because there were no more rooms available! I was opting for going back to the hotel, but Mark was concerned that I may not be getting enough oxygen on my own and sure enough, after watching me a bit longer - Rhonda, Dr. Yakes P.A. felt I should stay overnight where they could provide the oxygen I needed. It wasn't really as bad as I thought, the only drawback being not being able to shower and get the blood out of my hair! UGH! I know I looked terrible too - my left eye was swollen shut and the left side of my upper lip was huge!

Well, I hear that Dr. Yakes used 12 cc's of alcohol during the embo - and I didn't bleed during the procedure like I did the last time. Dr. Yakes told Mark that he felt we were finally out of the Pacific Ocean and into the Great Lakes as far as my procedures go!

So Dr. Yakes came by to see me in the morning before Mark arrived, and gave me a big hug and told me he was very happy w/what he is seeing! I had an angiogram done (groin stick - eeek!), so that really shows him what 's going on w/the avm! After he left, I went over to Dr. Yakes nurse, Julie and asked if Dr. Yakes really meant what he said about seeing the light @ the end of the tunnel! She said absolutely - he was very pleased with what he saw and it wouldn't be too much longer before Dr. Yakes could do some debulking of the avm! WOW! That is great news! I don't want to get my hopes up, but it would be fantastic to get some of the mass taken out! After the debulking, is when I would have the reconstructive surgery to help me look as normal as possible! We asked about Joanna from Portugal and were told that she has already had a couple of her reconstructive surgery and is looking very well! Can't wait until I can say that about myself as well!

On this trip, Mark has been sick w/lots of coughing, so it really took it's toll on Mark! After leaving the hospital, we headed back to the hotel, I got cleaned up and then Mark wanted to change the dressing on my wound. Well, when he did that, I had a bleed! We had to wait a while to get that stopped, but so far so good @ this point! We were just happy to get home w/out any more incidents!

Oh! I had to include a photo of this nurse in Ambulatory Care named Jill - she reminds us of Rhonda Ganz, a former choir member and neighbor to Celia out on the island! The final photo will be of Saba on the plane on our way home! She got her own seat in fact, so we were all comfortable!

We thank all of you for all your love, support and prayers! I have loved writing on my blog to keep all of you updated on all our adventures in Denver on our journey to getting rid of this AVM!

Thursday, October 2, 2008

Hi Everyone!

This will definitely be a happier blog than last time! The dark side of the avm has passed for now ... the steroids took effect, and as you can see from the photos, no more puffiness under my left eye! We all went out to celebrate Marks 21st birthday @ Red Lobster on Sunday! Had fun visiting with Mark and we all went to Mom and Vicente house later to play one of our favorite games - Mexican Train! I finally learned how to play and we all enjoyed having some ice cream and just visiting w/each other! We had so much fun - all this helps give me strength, knowing our family bond is so great! Vicente is always so welcoming and supportive!

I've been doing fairly well - avm wise. Had a very minor bleed here and there, and the main thing has been keeping the pain under control! Guess what time it is too? Time for us to head out to CO! We will leave on Monday and return home Thursday in the early afternoon!

We still have some loose ends to wrap up before the trip - looking forward to going and getting this darned avm stabilized some more! I want the wound area to heal already! Speaking of "wounds" - I'm thinking Saba may be having a little procedure of her own! I think she needs to be "fluffed and stuffed" a little bit - her left arm tends to hang a little looser than her right! I will call the Build a Bear place(s) in CO to see who can get her worked on when we arrive on Monday! Saba must be in her best condition - she gets compliments wherever she goes! I couldn't shake this one little girl on Monday while I was @ Wal-mart! She told me how pretty Saba was and then she had to round up her whole family to point Saba out to them! What can I say, Saba takes after me! Ha, ha, ha! Ok, I'm bobble heading over here, so I need to wrap this up!

Thanks to all who come by for a visit - we'll update this on our return from CO!

Mark & Cyndi

P.S. I must also point out that even though these trips are considered "medical", it's sooo nice to get out of Corpus Christi! Mark has been working overtime lately and of course besides his regular day job, he has the full time job of taking care of me! He's an excellent wound care therapist and especially an all around support for me! This past week we lost a dear choir friend, Smitty Leonard. He and his wife Mary Ella served 18 years in choir and Mary Ella plans to continue her choir ministry. While @ the Rosary, the people in the pew in front of us turned to tell Mark what a beautiful voice he has. Mark replied by telling them he served 21 years in choir, but that @ the moment, taking care of his wife is his ministry! Is he a Godsend or what? Couldn't do this whole AVM thing without all of you out there too! Don't ever doubt what a big part all of you play in my AVM Journey!